This week was a quieter week for appointments. Rob had radiation every day and is getting the hang of going to Cancer Care each day. He has now completed 15 out of 33 radiation treatments!! Each week on the weekend we have a look at how the upcoming week looks and plan out who is driving, when I am working and where Isaac will be. As you can imagine this is sometimes quite complicated but with help from family and friends we are managing well.
Rob had a follow up with Dr Butler, Radiation Oncologist, and Dr Sharma, Medical Oncologist this week. Both are pleased with how Rob is doing so far and his blood work from having chemo seems to be going back to normal and he will be able to have his second round. They both looked in his mouth and are really starting to notice changes but say they are normal and have lots of pointers to help out. Rob had his weekly appointment with the Dietician, Gina and she was thrilled because Rob gained weight this past week!! After chemo last round he didn't eat much for a few days and lost some weight so over the past 2 weeks he has been trying to gain it back and had success! Even with a sore mouth and not always wanting to eat it is very important to keep his nutrition up and stay hydrated because that will help his body recover from the drugs he is being given.
This week we decided to bring Isaac along with us one day when there were some shorter appointments. We didn't bring him because we couldn't find someone to look after him but because we thought it would be good for him to see where Rob comes each day. He did awesome and the doctors and other staff were so welcoming to him. That is one of the great things about Cancer Care...they care about the patient but also about the support team around them. Isaac is a huge support to Rob and the staff would know this. I am sure based on his time there that Isaac will gladly come back again plus now he knows what Daddy is busy doing each day. It was a win/win for everyone!
We are heading into this week of chemo with a little more knowledge of what to expect but this can be both a good and a bad thing. We know what is coming in the next few days but some of those things are not great. Rob had manageable side effects last round but he definitely wasn't himself for a few days. It will be a tougher week for sure but we will take it day by day. We know that by the end of the week he will be through the worst and will only have one more round left. Treatment day is on Tuesday and then he will have hydration on Wednesday and Thursday and help his kidneys flush the extra,
Back in September one of my girls that I mentored at my old church sent me an email to encourage me. It came at the perfect time and I cherish the words she wrote. She also shared 2 verses with me and I have read them many times since then. One of them was Zephaniah 3:17 which says, "For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful song." What a reassurance it is for us that God cares enough about our family that he takes away all the fears we have with his love. He loves us so much that he gave his Son to die on the cross and take away our sins. This is the reason we can face each day with a joyful heart and even through tough times we have hope.
Love Karen
Sunday, 9 November 2014
Sunday, 2 November 2014
10 down!
I can hardly believe it was over a week ago that I wrote the last blog post but I am happy to say that Rob has 10 treatments of radiation done already and has 23 left to go. We find having a countdown going helps to make it all feel more doable. After Mondays treatment he will be 1/3 of the way done!! So far things are going pretty well and Rob is still able to do many things. Rob is starting to feel soreness in his mouth and spends a lot of time taking care of his mouth. That being said he does not have severe pain or sores in his mouth like they said he might by this time. Rob and I were talking the other night about how he is feeling and what the doctors and nurses have told us he might be feeling (they give you worst case scenarios) and we are convinced that because of the army of people praying, he is not feeling the terrible side effects. We know that you are all praying that the treatments get rid of the cancer and that Rob does not have awful side effects and so far they are manageable. We are so grateful to have so many people praying for Rob and ask that you continue to pray.
On November 11th Rob will have his second round of chemo. He was able to get through the first one by sleeping a lot and making sure he took all of his anti nausea pills. He was taking 4 different pills to keep the nausea away and for the most part they did their job. We will go into the second round with a little more knowledge of what to expect and praying that the side effects are no worse then the first time.
Rob has to be very careful not to lose weight while he is getting treatment and during recovery. For the most part (except for a few days around chemo) he has a very good appetite. This is partially to do with his body rapidly trying to build new healthy cells and also because he is taking some medicine that has a steroid in it. Right now he is able to eat soft food and cut it up but if it is too tough he purees it. He also has lots of shakes and smoothies packed with protein. Over the next few weeks as the radiation adds up he may have a tougher time but we continue to pray that he has minimum side effects and can continue to eat they was he is now.
I saw my family doctor last Thursday and will be heading back to work starting Monday on light duties. I am healing well, however if I push it too much I could cause some problems which would be a big setback. I am still not allowed to lift anything heavier then 10 lbs and I can't push or pull anything over 100 lbs. This is a big deal when you work at a nursing home and push wheelchairs all day. Even pushing a half full shopping cart hurt my stomach a little. I am able to know very quickly if something is too much for me and will be able to do modified duties at work. In 2 1/2 weeks I will go back and see my doctor and hopefully will get the ok to resume my normal job and life.
We get asked often "how are you doing?" and it is a hard question to answer. We have moments when things feel totally fine and we have other moments that we feel completely overwhelmed and that we can not handle it. That being said we are not in the depths of despair but instead we go forward each moment in faith. Would we change our situation if you could?...yes of course. However we don't have that choice so we continue to walk forward one small step at a time knowing that God is walking right beside us and will not leave us. That doesn't mean that life will be easy but it means we are not alone. God continues to use many things and people to encourage us and remind us of this. Thank you for your prayers and support.
Love Karen
On November 11th Rob will have his second round of chemo. He was able to get through the first one by sleeping a lot and making sure he took all of his anti nausea pills. He was taking 4 different pills to keep the nausea away and for the most part they did their job. We will go into the second round with a little more knowledge of what to expect and praying that the side effects are no worse then the first time.
Rob has to be very careful not to lose weight while he is getting treatment and during recovery. For the most part (except for a few days around chemo) he has a very good appetite. This is partially to do with his body rapidly trying to build new healthy cells and also because he is taking some medicine that has a steroid in it. Right now he is able to eat soft food and cut it up but if it is too tough he purees it. He also has lots of shakes and smoothies packed with protein. Over the next few weeks as the radiation adds up he may have a tougher time but we continue to pray that he has minimum side effects and can continue to eat they was he is now.
I saw my family doctor last Thursday and will be heading back to work starting Monday on light duties. I am healing well, however if I push it too much I could cause some problems which would be a big setback. I am still not allowed to lift anything heavier then 10 lbs and I can't push or pull anything over 100 lbs. This is a big deal when you work at a nursing home and push wheelchairs all day. Even pushing a half full shopping cart hurt my stomach a little. I am able to know very quickly if something is too much for me and will be able to do modified duties at work. In 2 1/2 weeks I will go back and see my doctor and hopefully will get the ok to resume my normal job and life.
We get asked often "how are you doing?" and it is a hard question to answer. We have moments when things feel totally fine and we have other moments that we feel completely overwhelmed and that we can not handle it. That being said we are not in the depths of despair but instead we go forward each moment in faith. Would we change our situation if you could?...yes of course. However we don't have that choice so we continue to walk forward one small step at a time knowing that God is walking right beside us and will not leave us. That doesn't mean that life will be easy but it means we are not alone. God continues to use many things and people to encourage us and remind us of this. Thank you for your prayers and support.
Love Karen
Thursday, 23 October 2014
Who needs their appendix anyway!?
" Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23
On Saturday I sat at the computer and wrote the last blog entry having no idea what was going to happen that night. I wasn't feeling great from about noon on but I wasn't going to let that stop me. We had plan to go to our friends Jon and Jen's that night to hang out for a little bit and let the boys play. I figured I could lay on their couch just the same as I could lay on mine so we went. As we sat there the pain in my stomach got worse and I was feeling more and more nauseated. Looking back I am very thankful we went to Jon and Jen's that night because likely I would have just gone to bed and who knows what would have happened but they insisted that I go to the hospital. So Rob took Isaac home, Jon stayed home to put their boys to bed and Jen & I headed to Concordia Hospital. We arrived around 9pm...and then we waited and waited and waited. I was able to get comfortable sitting there but I still had the pain and knew I needed to be there. Around 3:30am I was finally brought to a room and about 4:30am the doctor came to see me. He said that he was 80% sure that I had an appendicitis. My white blood cells were up and I had pain on my right side but I didn't have a fever so that is why he wasn't 100% sure. He wouldn't be able to confirm until I had a CT scan sometime after 8:30am. After he left I just looked at Jen and burst into tears. I know that God has a plan and we need to trust him but aren't we going through enough?! At this point I don't think we will know why this is all happening right now but we still trust in a God who is faithful. Jen went home just before 7 am after pulling an all nighter with me and about 10 minutes later Rob arrived. About 9:30am I was taken to my CT Scan and then at 10:30am a doctor came and confirm what I feared. I had an appendicitis and would be transferred to another hospital shortly and have surgery that day.
After a bumpy ambulance ride I arrived at St Boniface and met a lovely nurse and lots of doctors. Just after 2pm I went into surgery which was less than an hour long. I had never had surgery before so was a little anxious about being put under and Rob had never had to watch me be taken away so he was anxious too. It was so weird to be doing a role reversal but it was a good perspective for both of us. I am happy to say that my surgery went very smoothly and they were able to remove my appendix before it ruptured laproscopically. This means that my recovery is 2-4 weeks versus 6 weeks if they had to do a bigger incision. It also means I could go home much quicker so on Monday morning, less then 24 hours after my surgery, I was able to come home. I think that in a normal circumstance an appendectomy wouldn't be super hard to deal with but going into the week we had it was very overwhelming. I am doing well, just moving very slowly. I had to miss some of Rob's appointments this week but I am happy that I was able to be at some of them and his mom went to the rest. I am not allowed to lift anything and can't even bend down to do up my own shoes. I am told to just be patient and give my body time to heal. Within a few weeks I should be back to normal and will be able to help Rob and look after Isaac.
Another big help is my best friend Sarah from Ontario was able to completely cancel her life for a week and make arrangements for everything to be looked after at home so she could come here for the week. We also had someone offer to pay for her flight which we are so grateful for. So on Monday evening, a few hours after I was home from hospital, she arrived and is here until Saturday. It has been great to have someone here to do laundry, clean the kitchen, get groceries and play with Isaac amongst other things. Both Rob and I are so grateful she was able to come and help us out.
Rob also had a big week this week. On Monday he started radiation and has had 4 treatments so far. They are going well but usually the first 2 weeks you don't have many side effects. Tuesday was the start of chemo. He will have 3 treatments throughout the next 6 weeks. They also give him extra hydration through IV for a few days plus a lot of anti nausea pills. Thankfully the anti nausea seem to be working. Rob is definitely not his usual self but he has taken this week very well. His biggest side effects to this point are an upset stomach and very little appetite at times and fatigue. Rob doesn't normally sleep very much but he is very tired now even after a few hours. We are hoping that each chemo are the same and that the weeks between give him time to recover. We will be glad for the weekend because we will have a break of being at the hospital. Adding up the hours Rob has been there this week for appointments for over 26 hours!
On top of starting radiation and chemo this week he also had follow up with Dr Nason and Dr Hayakawa ( his plastic surgeon who did part of his first surgery). Both were pleased with how Rob was healing but said that he needed to get through the rest of the treatment before any other steps were taken. Rob was encouraged to keep his tongue moving and practice swallowing so that his tongue doesn't stiffen up.
We just never know what we can handle but I can tell you one thing for sure, we could never handle any of this alone. We have an amazing support of people surrounding us, praying for us, bringing us meals, helping with Isaac, and just being there for us. Most importantly we have a relationship with a God who is faithful and loves us more than we will ever know.
Love Karen
On Saturday I sat at the computer and wrote the last blog entry having no idea what was going to happen that night. I wasn't feeling great from about noon on but I wasn't going to let that stop me. We had plan to go to our friends Jon and Jen's that night to hang out for a little bit and let the boys play. I figured I could lay on their couch just the same as I could lay on mine so we went. As we sat there the pain in my stomach got worse and I was feeling more and more nauseated. Looking back I am very thankful we went to Jon and Jen's that night because likely I would have just gone to bed and who knows what would have happened but they insisted that I go to the hospital. So Rob took Isaac home, Jon stayed home to put their boys to bed and Jen & I headed to Concordia Hospital. We arrived around 9pm...and then we waited and waited and waited. I was able to get comfortable sitting there but I still had the pain and knew I needed to be there. Around 3:30am I was finally brought to a room and about 4:30am the doctor came to see me. He said that he was 80% sure that I had an appendicitis. My white blood cells were up and I had pain on my right side but I didn't have a fever so that is why he wasn't 100% sure. He wouldn't be able to confirm until I had a CT scan sometime after 8:30am. After he left I just looked at Jen and burst into tears. I know that God has a plan and we need to trust him but aren't we going through enough?! At this point I don't think we will know why this is all happening right now but we still trust in a God who is faithful. Jen went home just before 7 am after pulling an all nighter with me and about 10 minutes later Rob arrived. About 9:30am I was taken to my CT Scan and then at 10:30am a doctor came and confirm what I feared. I had an appendicitis and would be transferred to another hospital shortly and have surgery that day.
After a bumpy ambulance ride I arrived at St Boniface and met a lovely nurse and lots of doctors. Just after 2pm I went into surgery which was less than an hour long. I had never had surgery before so was a little anxious about being put under and Rob had never had to watch me be taken away so he was anxious too. It was so weird to be doing a role reversal but it was a good perspective for both of us. I am happy to say that my surgery went very smoothly and they were able to remove my appendix before it ruptured laproscopically. This means that my recovery is 2-4 weeks versus 6 weeks if they had to do a bigger incision. It also means I could go home much quicker so on Monday morning, less then 24 hours after my surgery, I was able to come home. I think that in a normal circumstance an appendectomy wouldn't be super hard to deal with but going into the week we had it was very overwhelming. I am doing well, just moving very slowly. I had to miss some of Rob's appointments this week but I am happy that I was able to be at some of them and his mom went to the rest. I am not allowed to lift anything and can't even bend down to do up my own shoes. I am told to just be patient and give my body time to heal. Within a few weeks I should be back to normal and will be able to help Rob and look after Isaac.
Another big help is my best friend Sarah from Ontario was able to completely cancel her life for a week and make arrangements for everything to be looked after at home so she could come here for the week. We also had someone offer to pay for her flight which we are so grateful for. So on Monday evening, a few hours after I was home from hospital, she arrived and is here until Saturday. It has been great to have someone here to do laundry, clean the kitchen, get groceries and play with Isaac amongst other things. Both Rob and I are so grateful she was able to come and help us out.
Rob also had a big week this week. On Monday he started radiation and has had 4 treatments so far. They are going well but usually the first 2 weeks you don't have many side effects. Tuesday was the start of chemo. He will have 3 treatments throughout the next 6 weeks. They also give him extra hydration through IV for a few days plus a lot of anti nausea pills. Thankfully the anti nausea seem to be working. Rob is definitely not his usual self but he has taken this week very well. His biggest side effects to this point are an upset stomach and very little appetite at times and fatigue. Rob doesn't normally sleep very much but he is very tired now even after a few hours. We are hoping that each chemo are the same and that the weeks between give him time to recover. We will be glad for the weekend because we will have a break of being at the hospital. Adding up the hours Rob has been there this week for appointments for over 26 hours!
On top of starting radiation and chemo this week he also had follow up with Dr Nason and Dr Hayakawa ( his plastic surgeon who did part of his first surgery). Both were pleased with how Rob was healing but said that he needed to get through the rest of the treatment before any other steps were taken. Rob was encouraged to keep his tongue moving and practice swallowing so that his tongue doesn't stiffen up.
We just never know what we can handle but I can tell you one thing for sure, we could never handle any of this alone. We have an amazing support of people surrounding us, praying for us, bringing us meals, helping with Isaac, and just being there for us. Most importantly we have a relationship with a God who is faithful and loves us more than we will ever know.
Love Karen
Saturday, 18 October 2014
One week and 13 appointments!
The past 2 weeks has been quiet for appointments but we are about to make up for it this week. Between Monday and Friday this week Rob has 13 appointments. Some are bunched together but a few will require going back and forth twice in a day. We knew this week would come and there are mixed feeling about it. Part of us feel ready to get things going because the quicker it starts the quicker it will be done...the other part dreads the potential side effects and all the unknowns that come with chemo and radiation. Regardless of the effects of the treatment we are praying for complete healing and that the radiation and chemo would do what it is supposed to do and get rid of all of the cancer.
On October 10th we met with the medical oncologist (chemo doctor). This was a new doctor that we had never seen before. He didn't tell us any new news that we did know before but he just talked about the side effects and the reality of the disease very bluntly and it didn't sit well with me. Sometimes the doctors ease your worries and fears but in this case he almost added more. I think once we get started things will settle down but the last week has been filled with lots of tears, fears and prayers. Rob and I often have our bad days or moments at opposite times so we are able to support each other when we need to. The evidence of God surrounding us is incredible and we know there is an army praying for us as we walk this journey. We need to just take it day by day and not worry about the future.
As we head into radiation and chemo there are many possible side effects and we were told about even though he may not experience them all. The most common ones are nausea (which he has been given 4 different prescriptions for), vomiting, numbness and tingling of the ears and sores in the mouth. With Rob already having 2 surgeries done in his mouth we pray that he does not experience these. Radiation is 5 days a week for 6 1/2 weeks with regular blood work and follow ups. The good thing about radiation is that is only takes about 20 minutes. Chemo will be 3 times over the 6 1/2 weeks with the first one this Tuesday. It takes about 6 hours sitting with an IV on chemo day and then for the 2 days that follow he will have to go back and get 2 hours of IV fluids to ensure it doesn't sit in his kidneys.
Through all of this I have been trying my best to go to work. I work about half time and as long as I know Rob is fine at home and Isaac is cared for I am good to be at work. However when Rob is at appointments I find it hard to be at work and not there supporting him. My work has been very good and flexible and I am thankful for that. That being said I find all of the planning and arranging very overwhelming sometimes. I like things to be planned out but lately have found there are times when it feels too complicated and I have a hard time with it. Please pray that I am able to handle the scheduling part of all this and do not get overwhelmed.
We met with the woman that is arranging Rob's Long Term Disability the other week and she said that with Rob's case it is pretty straight forward. We will have a few weeks in between EI and LTD but God has been blessing us and we are so thankful for that. LTD has a certain way they determine how much money you receive and we are praying this amount is calculated in our favour.
Since surgery Rob has been working on his talking and ability to eat. He is slowly progressing with both things and is even able to eat some soft solid food now. One thing that he is having a hard time with is the actually movement of his tongue. The second surgery required the surgeons to take some of the muscle at the base of the tongue which could be why he is having a tougher time with it. We are praying that with time the movement comes back and that he continues to be encouraged by his improvement. Sometimes recovery feels like a very slow thing but yesterday I showed Rob a picture of himself right after his surgery a month ago to encourage him in how far he has come.
This week Rob and I were able to get away for a night just the 2 of us to relax. We had a great time in Hecla just being together. On Friday we went for a little walk at the tip of the island and there is a viewing tower there. As we got to the top right away Rob noticed a bald eagle flying close by. Rob loves bald eagles and its in little things like that that we are reminded that God is with us.
Thank you once again for caring for us and praying to our God who can do ALL things.
Love Karen
On October 10th we met with the medical oncologist (chemo doctor). This was a new doctor that we had never seen before. He didn't tell us any new news that we did know before but he just talked about the side effects and the reality of the disease very bluntly and it didn't sit well with me. Sometimes the doctors ease your worries and fears but in this case he almost added more. I think once we get started things will settle down but the last week has been filled with lots of tears, fears and prayers. Rob and I often have our bad days or moments at opposite times so we are able to support each other when we need to. The evidence of God surrounding us is incredible and we know there is an army praying for us as we walk this journey. We need to just take it day by day and not worry about the future.
As we head into radiation and chemo there are many possible side effects and we were told about even though he may not experience them all. The most common ones are nausea (which he has been given 4 different prescriptions for), vomiting, numbness and tingling of the ears and sores in the mouth. With Rob already having 2 surgeries done in his mouth we pray that he does not experience these. Radiation is 5 days a week for 6 1/2 weeks with regular blood work and follow ups. The good thing about radiation is that is only takes about 20 minutes. Chemo will be 3 times over the 6 1/2 weeks with the first one this Tuesday. It takes about 6 hours sitting with an IV on chemo day and then for the 2 days that follow he will have to go back and get 2 hours of IV fluids to ensure it doesn't sit in his kidneys.
Through all of this I have been trying my best to go to work. I work about half time and as long as I know Rob is fine at home and Isaac is cared for I am good to be at work. However when Rob is at appointments I find it hard to be at work and not there supporting him. My work has been very good and flexible and I am thankful for that. That being said I find all of the planning and arranging very overwhelming sometimes. I like things to be planned out but lately have found there are times when it feels too complicated and I have a hard time with it. Please pray that I am able to handle the scheduling part of all this and do not get overwhelmed.
We met with the woman that is arranging Rob's Long Term Disability the other week and she said that with Rob's case it is pretty straight forward. We will have a few weeks in between EI and LTD but God has been blessing us and we are so thankful for that. LTD has a certain way they determine how much money you receive and we are praying this amount is calculated in our favour.
Since surgery Rob has been working on his talking and ability to eat. He is slowly progressing with both things and is even able to eat some soft solid food now. One thing that he is having a hard time with is the actually movement of his tongue. The second surgery required the surgeons to take some of the muscle at the base of the tongue which could be why he is having a tougher time with it. We are praying that with time the movement comes back and that he continues to be encouraged by his improvement. Sometimes recovery feels like a very slow thing but yesterday I showed Rob a picture of himself right after his surgery a month ago to encourage him in how far he has come.
This week Rob and I were able to get away for a night just the 2 of us to relax. We had a great time in Hecla just being together. On Friday we went for a little walk at the tip of the island and there is a viewing tower there. As we got to the top right away Rob noticed a bald eagle flying close by. Rob loves bald eagles and its in little things like that that we are reminded that God is with us.
Thank you once again for caring for us and praying to our God who can do ALL things.
Love Karen
Sunday, 12 October 2014
A Thanksgiving reflection from Rob
Every year on Thanksgiving Sunday our church opens up the floor for people to thank God publicly for what he has been doing in their lives. It is a time to offer up our praise to God in a public yet personal way. Every year I have felt challenged to go up, but I've always had an excuse. So this Sunday, Karen and I shared in front of the congregation, in obedience to God's Word to be thankful. In Philippians 4:6 it is written: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."
Thanks be to God for his unfailing love! This year I have experienced God's love in ways that I would not have understood a year ago.
I thank God for my Saviour, Jesus Christ, who suffered and died for me on the cross, and gives me hope and strength.
I thank God for my wife, Karen, who has been so faithful and supportive.
I thank God for my son, Isaac, who gives me such joy and motivation to fight this disease.
I thank God for my family that has supported me through all of this.
I thank God for his church, this community of believers that bind up the broken and surround us with care and compassion. They have been such an outpouring of God's love.
I thank God for the medical advancements in our country and especially the health professionals that have dedicated their lives to healing and caring for those in need.
I thank God for showing me there is purpose in pain, that he is molding and shaping me more into the image of his Son, Jesus Christ. God provides grace in our suffering as Christians, to point others to Christ, the one who suffered on the cross to provide our saving grace. You see, in our suffering, God makes a way for us to become like Christ, and uses that to bring others into a relationship with him.
So again, Thanks be to God for his unfailing love!
Rob
Thanks be to God for his unfailing love! This year I have experienced God's love in ways that I would not have understood a year ago.
I thank God for my Saviour, Jesus Christ, who suffered and died for me on the cross, and gives me hope and strength.
I thank God for my wife, Karen, who has been so faithful and supportive.
I thank God for my son, Isaac, who gives me such joy and motivation to fight this disease.
I thank God for my family that has supported me through all of this.
I thank God for his church, this community of believers that bind up the broken and surround us with care and compassion. They have been such an outpouring of God's love.
I thank God for the medical advancements in our country and especially the health professionals that have dedicated their lives to healing and caring for those in need.
I thank God for showing me there is purpose in pain, that he is molding and shaping me more into the image of his Son, Jesus Christ. God provides grace in our suffering as Christians, to point others to Christ, the one who suffered on the cross to provide our saving grace. You see, in our suffering, God makes a way for us to become like Christ, and uses that to bring others into a relationship with him.
So again, Thanks be to God for his unfailing love!
Rob
Sunday, 5 October 2014
Exercising patience.
The other day a friend of mine sent me some quotes from a Tim Keller book she had read. One that really struck home with both Rob and I was “You don’t really know Jesus is all you need until Jesus is all you have." We both feel that without Jesus in our lives we would be in such a bad place. When you go through something that rocks your world you get to a point when all the things that used to matter don't anymore. We get so caught up worrying about so many things in life that we lose focus on what is important. Jesus loves us and died on the cross to take away our sins....that is all that matters. What is important is that we have a personal relationship with Jesus and that we serve Him and honor Him in everything we do. Sure we need clothes, food, shelter, family, friends...all of those are important but at the end of our lives all we will have is Jesus so that is where our focus should be. Without Jesus we would not have the hope we have right now...that is what allows us to still have joy in suffering and keeps a smile on our faces.
My last post I was praying that Rob would come home on Monday but apparently God wanted me to exercise some patience. I arrived on Monday first thing all set for a busy day and hoping for Rob to get discharged however that was not what the day looked like at all. Around 1:30pm Desmond (SLP) came by to assess Rob's swallowing again. He still felt that Rob needs to be on thickened fluids and a blenderized diet but he gave the ok to go home and practice swallowing until he feels comfortable with additional things. That was the good news of the day....the bad news was at 5:30pm after waiting all day we found out the doctor wasn't coming in that day. Since Rob's surgery was at a different hospital we were waiting on a different doctor to discharge him and we didn't know his schedule. I was beyond frustrated with the lack of communication and needed to vent so Rob encouraged me to spend sometime away from the hospital with a friend that evening. I did go back to see Rob and played a game in the atrium but I left a little earlier than normal and hung out with a friend for awhile. Rob is a smart guy and knew I needed some time to chat and it turned out to be a good thing for both of us. After some fresh chocolate chip cookies and a chat I had a much better perspective.
Tuesday morning came along and by 9:30am the doctor had come by and given the ok to go home. Rob messaged me and said he would be ready in a few hours and that Isaac and I could come and get him. He got the rest of the staples removed and the IV taken out. Once the discharge papers were in order he was free to go. The smile on Rob's face as we drove away was priceless! The feeling of having him come home is unreal and Isaac just kept saying how happy he was that Daddy could come home.
Now that he is home he is busy recovering from surgery to prepare for radiation and chemo. He is able to do some normal things and is much more able to do things than last time. He is happy to be sleeping at home again and has been having very good nights which we are very thankful for. The thing that takes up the most time (besides sleeping) is eating. Food needs to be pureed and for the most part drinks need to be thickened. You would be surprised at what you can puree when you don't have the option of eating it whole. For the most part Rob has been eating the same food as Isaac and I but it just needs prepared a little differently. Continue to pray that Rob is able to regain his ability to swallow and eventually chew. It is very important that he doesn't lose weight right now so he is as strong as possible for chemo and radiation.
On Thursday this past week we headed to cancer care to meet with Dr Butler, the radiation oncologist. He explained that Rob will have radiation 5 days a week for 6 1/2 weeks for a total of 33 treatments. They made a mesh mask of his face and neck to ensure accurate placement during treatment every time. It will take about 2 weeks for the team to figure out Rob's exact treatment needs. His first treatment will be on October 20th and will last into the start of December. We are also still waiting to see the medical oncologist about chemo but as far as we know Rob will receive 3 treatments of chemo while he is having radiation. Hopefully we get an appointment to meet with the chemo team this week.
Rob is nearing the end of his E.I. payments and will switch to Long Term Disability (LTD) with the school division. This week we are meeting with the person that is in charge of Rob's case. Pray that everything goes smoothly and his payments start as soon as he is eligible. We have a few weeks before LTD starts and E.I. will already be done so we are praying that things transition quickly and we will not have to wait for payments.
Over the next 2 weeks Rob will be focusing on resting and recovering from surgery, keeping his weight and strength up and practicing swallowing and talking. It also gives us a chance to have some time as a family when I am not working. Today we were even able to attend church together!
Our journey is far from over but we have made another huge step towards recovery. We continue to pray each day for Rob to be completely healed and we know our God can do that. Thank you for caring and praying with us.
Love Karen
My last post I was praying that Rob would come home on Monday but apparently God wanted me to exercise some patience. I arrived on Monday first thing all set for a busy day and hoping for Rob to get discharged however that was not what the day looked like at all. Around 1:30pm Desmond (SLP) came by to assess Rob's swallowing again. He still felt that Rob needs to be on thickened fluids and a blenderized diet but he gave the ok to go home and practice swallowing until he feels comfortable with additional things. That was the good news of the day....the bad news was at 5:30pm after waiting all day we found out the doctor wasn't coming in that day. Since Rob's surgery was at a different hospital we were waiting on a different doctor to discharge him and we didn't know his schedule. I was beyond frustrated with the lack of communication and needed to vent so Rob encouraged me to spend sometime away from the hospital with a friend that evening. I did go back to see Rob and played a game in the atrium but I left a little earlier than normal and hung out with a friend for awhile. Rob is a smart guy and knew I needed some time to chat and it turned out to be a good thing for both of us. After some fresh chocolate chip cookies and a chat I had a much better perspective.
Tuesday morning came along and by 9:30am the doctor had come by and given the ok to go home. Rob messaged me and said he would be ready in a few hours and that Isaac and I could come and get him. He got the rest of the staples removed and the IV taken out. Once the discharge papers were in order he was free to go. The smile on Rob's face as we drove away was priceless! The feeling of having him come home is unreal and Isaac just kept saying how happy he was that Daddy could come home.
Now that he is home he is busy recovering from surgery to prepare for radiation and chemo. He is able to do some normal things and is much more able to do things than last time. He is happy to be sleeping at home again and has been having very good nights which we are very thankful for. The thing that takes up the most time (besides sleeping) is eating. Food needs to be pureed and for the most part drinks need to be thickened. You would be surprised at what you can puree when you don't have the option of eating it whole. For the most part Rob has been eating the same food as Isaac and I but it just needs prepared a little differently. Continue to pray that Rob is able to regain his ability to swallow and eventually chew. It is very important that he doesn't lose weight right now so he is as strong as possible for chemo and radiation.
On Thursday this past week we headed to cancer care to meet with Dr Butler, the radiation oncologist. He explained that Rob will have radiation 5 days a week for 6 1/2 weeks for a total of 33 treatments. They made a mesh mask of his face and neck to ensure accurate placement during treatment every time. It will take about 2 weeks for the team to figure out Rob's exact treatment needs. His first treatment will be on October 20th and will last into the start of December. We are also still waiting to see the medical oncologist about chemo but as far as we know Rob will receive 3 treatments of chemo while he is having radiation. Hopefully we get an appointment to meet with the chemo team this week.
Rob is nearing the end of his E.I. payments and will switch to Long Term Disability (LTD) with the school division. This week we are meeting with the person that is in charge of Rob's case. Pray that everything goes smoothly and his payments start as soon as he is eligible. We have a few weeks before LTD starts and E.I. will already be done so we are praying that things transition quickly and we will not have to wait for payments.
Over the next 2 weeks Rob will be focusing on resting and recovering from surgery, keeping his weight and strength up and practicing swallowing and talking. It also gives us a chance to have some time as a family when I am not working. Today we were even able to attend church together!
Our journey is far from over but we have made another huge step towards recovery. We continue to pray each day for Rob to be completely healed and we know our God can do that. Thank you for caring and praying with us.
Love Karen
Sunday, 28 September 2014
Catch 22
There are many things with this hospital stay that are the same or similar to last time and there are many things that are different. Plus we forget about how things were when he was in hospital for 15 days last time. Today was day 10 this time and I am absolutely exhausted and want Rob home so badly. I will go back a few days and tell you about our week.
Since the surgery wasn't as complicated this time and we were not dealing with a tracheostomy and a skin graft (praise the Lord!) there were many days that almost nothing happened and we did lots of just waiting around. Maybe that is why this stay feels harder. On Wednesday morning the drain that was removing fluid around the lymph nodes was removed! This is the tube Isaac refers to as the rainbow tube and it doesn't hurt but is uncomfortable so Rob was very pleased to get it out. The doctors would come and check on him each day but for the most part they would say things are going well but be patient and then be on their way. We knew Friday would be a big day because Speech Language Pathology (SLP) was coming to assess Rob's swallowing. I made sure I was there as early as I could be on Friday but no one came all morning, or afternoon. Once 3pm hit I went to the nurses and said that they needed to get someone from SLP here because we were not waiting until Monday to start this process. About 10 minutes later Desmond showed up to do the swallowing assessment. I explained our experience with and NG tube and swallowing problems. We really felt we were going to have to do some convincing that we knew what we were talking about. From last time we knew that Rob cannot swallow with the NG tube in however normally they do not remove that tube until you can swallow....you see the problem here!! Desmond got Rob to try swallowing some thickened juice and as we knew would be the case he was not able to swallow it properly. He said he wanted to do a Fluoroscopy (like they did in May) so that he able to see how things are working on Monday and for the weekend we would leave the tube in and have nothing by mouth. He left the room and I burst into tears. I was frustrated that we weren't heard and needed things to keep moving forward. Rob was the strong one and told me that we had to keep trusting God and that He was watching out for us. No more then 10 minutes later Desmond comes back into the room and said he talked to Dr.Pathak and he said to pull the NG tube and let Rob swallow. And just like the NG tube was gone!!!! Praise the Lord. We could have both done a dance we were so excited. After the tube was removed Rob's swallowing was assessed again. He did much better but there is still fear he is aspirating some into his lungs. Basically over the weekend Rob was put on a thickened clear fluid diet. The only problem with that is the hospital does not have many options on this diet and having apple, orange or cranberry juice and tea or coffee is not enough calories for Rob so I asked if he could have Ensure. The last few days have been spent practicing swallowing and meals take quite awhile. Please pray that Rob is able to get back to where he was with swallowing and he no longer aspirates. It feels like we took about 10 steps backward but we know Rob can get back to where he was. On Monday he will see SLP again and hopefully they are pleased with his progress and give the ok to go home.
On Saturday morning half of the staples were removed. It is normal for them to do every other and wait a day to make sure nothing opens up. Tomorrow he should be able to get the rest out as it is looking really good.
Without having an NG tube it meant that Rob's IV could be closed off temporarily and he could leave without his IV pole. This weekend we were able to go for lots of walks and went across the street to the little park. We were even able to take Isaac to the playground and Rob pushed him on the swings!
So we go into a new week hoping that as soon as possible Rob can come home. At this point I think he would do better at home and any care he needs I can help him with. Pray that we are both patient, that Rob comes home on Monday, that the doctors listen and that Rob can gain strength in his swallowing.
We continue to place our hope in the only one who can give us hope. God continues to show us his love and encourage us. We still have times of discouragement but then God leaves a little encouragement for us to keep us going and trusting in Him.
Love Karen
Since the surgery wasn't as complicated this time and we were not dealing with a tracheostomy and a skin graft (praise the Lord!) there were many days that almost nothing happened and we did lots of just waiting around. Maybe that is why this stay feels harder. On Wednesday morning the drain that was removing fluid around the lymph nodes was removed! This is the tube Isaac refers to as the rainbow tube and it doesn't hurt but is uncomfortable so Rob was very pleased to get it out. The doctors would come and check on him each day but for the most part they would say things are going well but be patient and then be on their way. We knew Friday would be a big day because Speech Language Pathology (SLP) was coming to assess Rob's swallowing. I made sure I was there as early as I could be on Friday but no one came all morning, or afternoon. Once 3pm hit I went to the nurses and said that they needed to get someone from SLP here because we were not waiting until Monday to start this process. About 10 minutes later Desmond showed up to do the swallowing assessment. I explained our experience with and NG tube and swallowing problems. We really felt we were going to have to do some convincing that we knew what we were talking about. From last time we knew that Rob cannot swallow with the NG tube in however normally they do not remove that tube until you can swallow....you see the problem here!! Desmond got Rob to try swallowing some thickened juice and as we knew would be the case he was not able to swallow it properly. He said he wanted to do a Fluoroscopy (like they did in May) so that he able to see how things are working on Monday and for the weekend we would leave the tube in and have nothing by mouth. He left the room and I burst into tears. I was frustrated that we weren't heard and needed things to keep moving forward. Rob was the strong one and told me that we had to keep trusting God and that He was watching out for us. No more then 10 minutes later Desmond comes back into the room and said he talked to Dr.Pathak and he said to pull the NG tube and let Rob swallow. And just like the NG tube was gone!!!! Praise the Lord. We could have both done a dance we were so excited. After the tube was removed Rob's swallowing was assessed again. He did much better but there is still fear he is aspirating some into his lungs. Basically over the weekend Rob was put on a thickened clear fluid diet. The only problem with that is the hospital does not have many options on this diet and having apple, orange or cranberry juice and tea or coffee is not enough calories for Rob so I asked if he could have Ensure. The last few days have been spent practicing swallowing and meals take quite awhile. Please pray that Rob is able to get back to where he was with swallowing and he no longer aspirates. It feels like we took about 10 steps backward but we know Rob can get back to where he was. On Monday he will see SLP again and hopefully they are pleased with his progress and give the ok to go home.
On Saturday morning half of the staples were removed. It is normal for them to do every other and wait a day to make sure nothing opens up. Tomorrow he should be able to get the rest out as it is looking really good.
Without having an NG tube it meant that Rob's IV could be closed off temporarily and he could leave without his IV pole. This weekend we were able to go for lots of walks and went across the street to the little park. We were even able to take Isaac to the playground and Rob pushed him on the swings!
So we go into a new week hoping that as soon as possible Rob can come home. At this point I think he would do better at home and any care he needs I can help him with. Pray that we are both patient, that Rob comes home on Monday, that the doctors listen and that Rob can gain strength in his swallowing.
We continue to place our hope in the only one who can give us hope. God continues to show us his love and encourage us. We still have times of discouragement but then God leaves a little encouragement for us to keep us going and trusting in Him.
Love Karen
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